Autism Aspergers Advocacy Australia

Sarah Martin, Political Reporter

Jedd (3) with behaviour therapist Stephanie Miller at the AEIOU Foundation, Huntfield Heights Centre.Source: News Corp Australia

SEVERELY autistic children are receiving less funding in trials of the National Disability Insurance Scheme than they were under previous funding arrangements.

Early intervention service provider the AEIOU Foundation, which set up in South Australia to test its viability under trials of the new national disability funding model, says it cannot operate effectively under the scheme.

AEIOU chief executive Alan Smith said it was able to provide only five days a fortnight of intensive therapy under the NDIS, compared with 10 days where the scheme was not yet in effect, in Queensland.

Programs for the 0.1 per cent of children with autism disorder require about $45,000 for each child, but the NDIS has set a benchmark payment of $16,000.

The National Disability Insurance Agency (NDIA) adopted a flawed approach that blames parents implicitly for their child's autism and poor long-term outcomes. The NDIA is charged with funding early intervention for children with disability … and “disability” includes autism spectrum disorder (ASD). The NDIA's Operational Guideline – Access – Early Intervention Requirements can be downloaded here.

As well as describing the NDIA's eligibility criteria for ASD as gobbledygook (see here), community members regards the NDIA's approach to Early Intervention for children with ASD as flawed. The NDIA adopted the “Seven Key Principles” approach described in a document from a “Workgroup on Principles and Practices in Natural Environments” (see download page here)

There are strong feelings in the the ASD community that the principles the NDIS suggest/adopted are dangerous, misleading and offensive. The NDIA's early intervention principles ignore the relevant science and deny children effective treatment for their ASD. Clearly, the principles were written by someone/persons who are not informed about intervention, treatment or the science of intervention for ASD. Members of the ASD community are deeply disappointed that this document is used as the NDIA's official position on early intervention related to ASD.

In this video Bob Buckley describes his recent experiences with National Disability Insurance Scheme (NDIS) planning. His advice tries to help others prepare for their transition to the NDIS. He suggests that people can reduce their stress over NDIS planning if they better understand the processes and likely outcomes.

Bob Buckley's son (who is 23yo with severe autism) has one of the earlier NDIS plans approved in the ACT. The process took 11 days and delivered substantially more support/resources than was previously provided. The plan is much more flexible than the previous arrangement.

For children with autism/ASD, Australia lags far behind the USA. Australians like to think their health system is superior to the US health system ... but not so for the growing number of children diagnosed with ASD in Australia.

The US Government made it clear that US "states must cover all medically necessary services for children, including services to address ASD" (see http://www.medicaid.gov/Federal-Policy-Guidance/Downloads/FAQ-09-24-2014.pdf). 

By Rebecca Trigger

Families of children with autism are facing tens of thousands of dollars in costs and lost income, a Western Australian researcher has found.

The study — thought to be the first of its kind in WA — set out to measure whether a delayed diagnosis increased long-term costs for families.

But the paper, published in this month's edition of journal PLOS ONE, also established the median cost of a child being diagnosed with autism as $34,900 per annum.

Curtin professor and joint author Torbjorn Falkmer said the findings, drawn from the responses of 317 Western Australian families, had huge implications for parents.

"The majority of that cost, 90 per cent of it ... is because of the lack of the chance to have employment because parents have to stay home and take care of the children with autism, because they don't get the support they need," Dr Falkmer said.

"I think the system we have right now is showing us that parents are being forced to stay home, because they can't take a job because someone's got to take care of the kids.

• Tracey Hayes has photos of her twin boys strapped to chairs at Monash Special Developmental School in Melbourne
• Other parents of autistic children have also made complaints about how their children have been treated in Victorian schools
• Rebecca Cobb claims she was forced to pull her autistic son Tristan out of Marnebek school, in Cranbourne, because he was repeatedly locked in a small dark room

A4 submitted the report below to the Australian Government's Review of Australia’s Welfare System.

A4's report highlights that ... 

• people with autism want to work and are capable of working. The problem is that employers, including governments in Australia, simply do not employ people with autism,
• describing people with disability as "leaners", or as "rorters, bludgers, slackers, etc." does not improve employment outcomes,
• growth in Disability Support Pensions is not even as big as growth in autism diagnoses ... so there is no real welfare crisis, but growth in the number of people diagnosed with autism deserves much more attention, and
• Australia's welfare compared to GDP is below average for the OECD so Australia's welfare system is sustainable at present and is not heading towards being unsustainable, as the current Government claims.

Editorial: Shame, Minister, Shame.

The article below shows Victoria's Disability Services Minister, Mary Woolridge, will believe anything bureaucrats tell her but believes very little to do with realities of people with autism spectrum disorder.

Apparently, she is oblivious to her own NDIS schedule ... since she looks to the NDIS and ignores that her disability services outside the NDIS trial site are stagnant or in decline. Besides, people outside the NDIS trial sites still have years to wait for access to NDIS funced services and supports. Then there is the issue that the NDIS does not fund respite ... so the Minister's proposed solution for these people is misguided and uninformed. The value of such a Minister is extremely dubious. 

Services and support for people with autism spectrum disorder are especially poor because officials have very poor understandings of autism spectrum disorder. This story shows that senior health officials in Australia have no understanding of the clinical services the people with autism need to treat their chronic behaviours that are left untreated (even refused treatment) for years. They simply do not understand that respite is not treatment. It beggars belief that Victoria's senior health officials regard respite as the best treatment and rehabilitation for chronic behavioural challenges ... as the article below shows.

It is hard to believe that neither the hospital nor the union asked about respite. If they couldn't find a respite place, then the family had no chance. And DHS's "no wrong door" glib tag clearly failed on this occasion. The Minister is cruelly portraying this devastated family as naive nuisances. Shame Minister, shame!

The National Disability Insurance Agency (NDIA) is ignoring expert advice and existing government policy on early intervention for children with autism spectrum disorder (ASD). Instead, the NDIA adopted a generic and often inappropriate approach that does not address the distinct needs of children with ASD.

The Department of Health advised families* in 2006 that children with ASD need “best practice” intensive ASD-specific early intervention. Later, the Department of Social Security (formerly FaHCSIA) effectively asked ASD experts “are you sure … and what about just 'good' practice?”. The experts responded pretty much “Yep, we are sure … and 'good practice' isn't much different from 'best practice'” (links* to the report are here MS Word & PDF and the Guidelines for Good practice 2012 MS Word & PDF ... webpage here).

A story headed Disabled children are left behind in the Bendigo Advertiser (see below) raised issues about how the education system in Victoria addresses the needs of children with ASD.

An official from the Victorian Education Department responded immediately (see below). Unfortunately, the officials's response was just wrong, as is far too often the case (e.g. http://a4.org.au/a4/node/824).

The response to the official's claims was immediate and "direct". Ms Kelly wrote to the Bendigo Advertiser and posted her letter on facebook (link here) where her message to the Bendigo Advertiser received significant support from families in her region.

In reference to Jeanette Nagorcka's not so well thought out letter/response in today's Bendigo Advertiser.

Ms Nagorcka

I have evidence and physical proof that every word you wrote in your letter titled Disabled Children article concerns is inaccurate. But at least you responded, unlike all of the letters and complaints that have been sent to you not only from this region but others including Geelong that you have chosen to dismiss.